Govt adds six rare diseases under National Policy for Rare Diseases

To receive financial assistance for rare disease treatment, patients in the nearby area may approach the nearest CoE for assessment and to avail of the benefits

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Last Updated on January 6, 2024 by The Health Master

Download National Policy for Rare Diseases (NPRD), 2021, the link is given below: The Union Health Ministry has included six rare diseases, such as Laron’s syndrome, Wilson’s disease, and hypophosphatemic rickets, among others, into various groups of disorders under the National Policy for Rare Diseases (NPRD), 2021.

This decision allows patients with these diseases to receive financial assistance for treatment. The NPRD, launched in March 2021, categorizes rare diseases into three groups:

  • Group One: disorders amenable to one-time curative treatment
  • Group Two: diseases requiring long-term/lifelong treatment, having relatively lower treatment costs, and documented benefits in literature that require annual or more frequent surveillance.
  • Group Three: diseases for which definitive treatment is available, but challenges exist in making optimal patient selection for benefit due to very high cost and lifelong therapy.

The Ministry released an office memorandum stating that Laron’s Syndrome is now included under Group One, whereas Wilson’s disease, congenital adrenal hyperplasia (CAH), and neonatal onset multisystem inflammatory disease (NOMID) have been added to the Group Two disorders.

Hypophosphatemic rickets and atypical hemolytic uremic syndrome (AHUS) have been added to Group Three disorders.

Financial assistance for these rare diseases will be provided based on the provisions outlined in NPRD, 2021, and guidelines and procedures issued to all Centers of Excellence (CoEs).

The Policy offers financial support of up to Rs. 50 lakhs to patients suffering from any category of rare disease for treatment at any of the CoEs mentioned in NPRD-2021, outside the Umbrella Scheme of Rashtriya Arogaya Nidhi.

To receive financial assistance for rare disease treatment, patients in the nearby area may approach the nearest CoE for assessment and to avail of the benefits.

The MoHFW is identifying CoEs for diagnosis, prevention, and treatment of rare diseases.

The NPRD, 2021, also has provisions for promoting research and development for the diagnosis and treatment of rare diseases, promoting local development and manufacture of drugs, and creating a conducive environment for indigenous drug manufacturing for rare diseases at affordable prices.

In February 2022, the Ministry of Finance provided an exemption from Basic Customs Duty to drugs or medicines used in the treatment of rare diseases when imported by CoEs specified in NPRD, 2021, or any person or institution recommended by a CoE listed in NPRD, 2021.

The certification must state that the person, by name, for whom the drugs or medicines are imported, is suffering from a rare disease (to be specified by name) and requires the drugs or medicines for the treatment of the rare disease.

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